I was in college when I had my first major/obvious exacerbation. I’d had some symptoms prior but I’d brushed them off as nothing. This first exacerbation was about six years before I was diagnosed, and the result of testing was my doctor telling me we’d ruled out everything *but* MS, and she strongly suspected that’s what was wrong, but I couldn’t afford an MRI or further testing at the time. I recovered, and she told me I may just never have an attack again, and to hope for the best.
I graduated, moved, and was working in my field part-time while looking for full-time work in the field when my life went sideways. A lot of things went really wrong at the same time, my stress levels hit an all-time high, and about the point where I thought it was over and I could “get back to it”, I had an attack. Then another, then… a prolonged period a ridiculous amount of testing. MRIs. A lumbar puncture to confirm, then a month-long recovery from the LP. MS went from being “suspected” to “confirmed”. I was put on Tecfidera, changed neurologists, switched to Gilenya, had breakthrough activity, then switched to Ocrevus (currently).
My degree and work I was pursuing were in a field that could easily lead to “crunch”, 100-hour weeks. Layoffs, high stress, high burnout. I knew that well in advance before I started pursuing my degree, and I wanted it. At the time I “knew” I could handle it.
Something about hearing I had an incurable illness that could have all kinds of irreversible health complications literally froze me in place. I had (and still have) a million questions, but I think part of the journey is learning to accept that there aren’t any answers and to take everything one day at a time. I spent two years post-diagnosis figuring out how to take care of myself again, with this new set of criteria. I stopped modeling, I stopped drawing, I stopped reading (outside of medical literature). I stopped enjoying my life. During this time I didn’t fall out of love with the field I want to continue working in, but I did learn I need to value my time and have balance if I want to be able to manage this disorder.
For me management means eating well, clean, exercise, taking time out of my day to appreciate what and who is around me. I need to be able to have time to work on my garden/plants or hang with my cats, have some tea, and read a book. It may sound inconsequential but that time away from the chaos is how I find my center. Obviously this would be different for everyone.
Before ALL of this, I had worked in marketing as a graphic designer, and continued to do weird random tasks for literally everyone I know (personally or professionally), so that’s always been a part of my adult life. Looking for career shifts into areas that appealed to me, eventually, I landed on UX/UI, particularly in the heavy emphasis on empathy and improving user experiences for, well, users. I liked the idea of shifting focus from just the business needs to consider the user’s needs as well. (You really don’t need to feature proudly your side gig of breeding Pomeranians with your used auto dealership.)
I’m taking some classes online to round out my skills and understand the UX process better, and so far I think I’m really content with my decision. It’s particularly interesting to me because I would see services like User Testing and feel all the nasty I associated with marketing, but once UX design was laid out in plain English for me, I realized the necessity of the field and the role that designers play. It’s not the side I came to see as ugly and disingenuous, but rather bringing the human element back into the thing where it’s absence made me uncomfortable.
Even better is the potential for me to find a way to use this to contribute socially in a way I find meaningful (non-profit, medicine, animal welfare, etc.) where if the work weren’t enough to keep me motivated, the places I could help could be. I think that the way I’ve taken my diagnosis lead to an appraisal of myself and my values in a way I couldn’t have anticipated. Sometimes that translates into more anger at injustice, but more often an opportunity to speak up and actually do something productive and helpful. I’m still a shy introvert, just now one an incentive to get on with it.
I have some regrets in that the field I had my heart set on still means a lot to me, but I can take the skills I learned there and translate them to other applications. I can still do the work, and I can create things in my spare time for myself that I wouldn’t have learned in the same capacity had I not chosen the path I did. My regret is generally that it was something I so strongly identified with, but it didn’t define me. Perhaps it’d be more adequate to regard this regret as grief. I’ve mourned. It’s the same with this disorder. It’s easy to allow something to be so encompassing, but nothing in life is guaranteed.